Guilt

Loss works a painful hindsight on your actions. You become acutely aware of all the actions you could have taken, but did not. With the perfect clarity of your present knowledge, unencumbered by the demands of actually acting, you suddenly become aware of all of these contingencies that in the moment you never even thought of. I find myself going over things again and again, racking my mind for something, anything that I could have done differently.

There's a thousand thoughts about how he got sick. Did I expose him to something, when I held him in my lap with my phone in my pocket, did it give him cancer? Should I have let them do the catscan when he was 4 months old? James' tumor was a random one. Some ATRTs are the product of a mutation throughout all the cells of the body, an innate flaw that lurks patiently in DNA, until tripped by some random event or another. James wasn't that. The only sick cells in his body were the tumor cells. He was perfect in every way otherwise, just as God made him. So I keep asking myself what did it? What tripped that first cell into an ATRT cancer cell, especially one like James' ATRT? A furiously aggressive tumor, even by ATRT standards, it burned through his body and killed him in less than the time he was supposed to have to recover from his craniotomy. That one illusory success we enjoyed throughout our whole stay at the hospital. This is all foolish of course. He didn't get cancer from a catscan, a phone, or something in the water- if anything that catscan helped us because we wound up having a benchmark when James first got to the hospital, so the doctors knew better than to treat him for something else. You hear nightmare stories of parents in and out of the hospital for months without an ATRT diagnosis, their children suffering. We found out in just over a week after James got sick. Nothing caused James' tumor that I or anyone else did. It just was. Somehow knowing that just doesn't help.

Then there's the guilt about when he was sick. When he first got sick I didn't really take it seriously. He's a sick baby, babies get sick. He's throwing up, what's another summer bug. I just didn't worry about it. We went to the pediatricians and I patiently waited for them to confirm my suspicions, toss some zofran our way and send us on our way. I never pushed them to do more. I never thought- hey, could this be serious? Even when we went to Medical City Children's, I remained supremely unconcerned. Here's where the first real guilt creeps in. Shouldn't we have gone to Children's? They found his tumor there. We only saw a doctor right before we left at Medical city and they barely even examined James. They just gave him fluids and got hacked when we made them stop trying to give him an IV after they screwed it the first few attempts. They had an IV team at Children's that did it in one take. I should have been more aggressive, I tell myself. I should've gone somewhere else, found the diligent and sharp intern (never believe people who tell you not to go to teaching hospitals) who first noticed James' symptoms at Children's. I should have pushed for more treatment faster. I should have made them find it, instead of sending us home with James still sick. He deserved a better father than that. Still, I remember being by and large supremely unconcerned, if annoyed by the care we received. He's throwing up, I remember thinking to myself, we'll get fluids, medicine, and life will go on. It's not like he's dying. I probably even made some stupid jokes. I don't remember.

Even on the way to Children's, stopping by the house to pick up clothes and toys for a quick one night stay I remember my worst case scenario having evolved from the weekend to that Wednesday from stomach bug to stomach parasite, as WebMD warned me. WebMD did not suggest brain cancer. Still, I assumed a night of observation would translate into a quick solution and an easy out. Just need to pick out the right med. If anything, I thought I was overpacking, with at least half his toys and about a week's worth of clothes. I remember talking to someone (can't remember who- I remember very little about that day before the hospital) at work that day about James being sick and them asking if it was serious, and my lackadaisical response of no. How could it be serious? He was an eight month old. What happens to eight month olds? My mother asked me if I wanted her to come down and I said no, he's fine. And fool that I was, I believed it. I feel so guilty about that. He must have been in so much pain and here I am, his father, brushing it off as something not that serious, a bump in the road and a one off night at the hospital. I feel so guilty about that, about how "ok" I was until the differential started narrowing. I know we caught it "early" relative to a lot of people, that we were diligent with 4 pediatrician visits and 1 ER visit in a week before getting admitted. Still, I feel like I could have done more. Should have done more.

When he was sick, there's still more guilt. Not pushing the doctors hard enough to get another MRI after his post-op MRI, contenting myself with feeble catscans and still less useful medicines. I worry about how much pain he was in, how little medicine we gave him. My poor little boy. I feel guilty about each and every night I went home to sleep. I had barely three weeks left to spend with him, and I spent more than one night away from his side. I would give anything for just one night in the PICU again, with James stubbornly refusing to sleep, pawing at his leads and his IVs. I'd kill to try to spend another night on the worst of those PICU beds, the uneven vinyl pullout with less padding than my cheapest sleeping bag, barely long enough lay down on, more comfortable your leg hanging off it. I feel so guilty about that. About the Rangers game we went to, the meals out we had. Every moment I spent away from him. I feel guilty about the end. Did I give him the right medicine? Too much? I followed the directions but what if I screwed it up? What if I made it faster.

Above all, I feel guilty about the time I missed with him while he was still here. There are so many things I wish I'd done that I thought I'd have time to later. So many experiences lost. I really don't have words for that. I could lie to you, but why bother? I know better. I assumed I'd have years to learn to be a better parent, and I just didn't get there.

I've read enough on grief to know at this point that guilt is "natural" and part of the healing process, that I'm projecting and deflecting, attempting to avoid the reality that there is no one to blame, no one to be angry at, and no one to seek satisfaction from. As always, academic understanding is useless. I know I'm not going to die on a roller coaster, but my body often disagrees. The guilt I feel about James is a bit like that. I know it won't help anything, I know it can't. I know it won't help me, but there it is, whispering in my ear reminding me of all I could have done. So I just feel it. The silly thing is that nothing I could have done would have mattered. If they'd found James' tumor that weekend, he'd still be dead. If I'd spent every night with him, he'd still be dead. Nothing I or anyone could have done would have made a difference. But I was his father, his protector- I was supposed to be able to do things like that for him. Sometimes I feel like guilt helps me remember that, helps me connect to him in an odd way. It's a link of responsibility. I miss that.

Thank all of you for your continued thoughts and prayers.

Day Seven

Here is Jamesie with the newest member of his menagerie. As you can see, James has acquired yet another giraffe, a larger, plusher species. If you look closely you can see that he is peeking at you through the his giraffe pacifier, which he simply cannot shove far enough down his throat. He's also saying "Way to be an idiot and not turn off the flash Daddy." James is very technologically advanced like that, he always turns the flash off before he takes his phone self-portraits.

Today did not go as planned. Although that's true of most of our days lately, today in particularly seemed to just start off on the wrong foot and never really recover. I spent the night at home, which was nice. I slept about 11 hours until my mother woke me up inadvertently when she came in to get something. I showered again, shaved for the first time in a week, and went to the hospital.

The day was already in full swing- James was taken to get his EVD out soon after I arrived, and we were told that we could get to go home tomorrow. Things seemed to be going well. A certain frenetic energy was on the floor today, the staff seemed a little flustered and the floor was crowded. Things took a little longer to get done.

James threw up after he got his EVD out. There was some concern about whether or not that translated into more swelling. He went to a rapid MRI, which showed there might be a complication from the surgery. He threw up the steroids they gave him. Housekeeping never came to clean it up. A surgeon came around to talk to us for consent to get in a port for his chemotherapy. He threw up again immediately after, before we had time to process. We cleaned again. Housekeeping ignores my calls.

In the middle of this, everything stopped. We'd been told the oncologist would be visiting us at some point in the day to tell us when we could go home, etc. and just briefly speak with us about the results of the surgery, whether they'd need to go back in and get more based on the MRI results.

We were not expecting results. In a strange way, the fact that we weren't expecting them made it a bit better. Unlike yesterday, we weren't waiting all day for something to happen. Something just happened. When she came in all was well- the corner where she came to talk to us was a little crowded, so we sat in chairs and she, unable to find a spot, just sat on the floor. That's the kind of person she is apparently, and I like that.

Once we sat down she informed us, from the floor, that James has an atypical rhabdoid tumor. As many of you know, this was the exact opposite of what we were hoping and praying for. We were upset, but fortunately she remained very calm. Before speaking with us, she'd written up a treatment plan for James. She explained to us that the type of tumor James has is very rare. It is a type of tumor that occurs exclusively in children under 2 and is very aggressive. There are perhaps 30-35 reported cases every year. Five years ago, she said, this diagnosis meant death. Now, however, treatment is possible. The type of treatment James will undergo is very intense and very likely to change our life forever. James' treatment plan is designed to last 52 weeks and will likely go longer depending on how he tolerates it. We will undergo three week rounds of chemo, beginning each with a few days in the hospital before we can go home. The side effects of the therapy will be significant. The list of drugs they gave us that James will be on is over twelve pages long. I have yet to fully process this. Halfway into the conversation Kara joined our oncologist on the floor. I remember thinking that of the many different ways I imagined this situation once I knew it might happen, none of them involved my wife and the doctor sitting on the floor at my feet, with the doctor's PA, myself, and my father sitting over them. There is no known cause of this disease. As the doctor said, it is just really, really unlucky and unfair. There may be a genetic mutation that contributes, but that's a low percentage shot. James, Kara and I will be tested anyway.

After the diagnosis, the day passed quickly. We called family. We tried to make sense of things. James still couldn't eat- he had to get an ultrasound on his kidneys- if the tumor has spread anywhere other than his nervous system (which was clear based on previous testing) it would be there. The ultrasound meant he couldn't eat until afterwards, and as he threw up everything he ate before, this meant he was starving, and furious about it. We spent the afternoon trying to entertain him. Finally, we went to the ultrasound. We won't know the results for a while. Now we're feeding James, trying to take advantage of the short window between the ultrasound and the 12:00 cut off for food due to his surgery tomorrow.

Despite the diagnosis, we are looking for the positives. James will lose his hair. Fortunately, James already has had more hair in his life than almost every baby his age. At his first hair cut, the hairdresser commented she'd never seen a baby his age with that much hair. Perhaps God knew James needed to start with as much hair as possible, so that when he lost it he would already had a good run. Perhaps Kara and I are James' parents for a reason- I'll elaborate on that later. Likewise, there is a treatment for this. Survival is possible. In the five years that Kara and I have been married, treating this became possible. When Kara and I got married, nothing could be done about this. Now something can.

Below is an old picture of James- he's a few weeks old. He's trying to crawl over his boppy and get at me. He's always been an active, able boy. He can fight this, and he will. I take comfort in the fact that in a few years, he will have no memory of all this, the entire year that we will spend battling this disease. He can grow up without the burden of that experience.

The last week felt like a lifetime. I cannot imagine what the next year will feel like. I am thankful for everyone who has volunteered to walk with us, to pray for us and support us. We will certainly need the support, and your thoughts and prayers have already meant world to us. Thank you.

How the Heck we got here

(James at 2 weeks old :) )

Wow. To say the least, when I think back on the last few days I am overwhelmed. Sometimes I don't even know how we got here. When every new doctor or nurse comes into the picture, they all ask us to start at the very beginning and describe James' birth. So I guess that would be the most appropriate place to start.

I went into labor a little after midnight on October 29, 2010. My water broke at home about 2 and half hours after my first contractions started. Matthew and I headed to the hospital after calling our OB, where the resident on duty told me that I was not in labor, nor had my water broken. It took several hours to convince her that I was actually in labor. After all, James was 6 days late (and I was totally counting!) and if I wasn't in labor then I sure as heck needed to be. My contractions were lasting about 6 minutes long (yes, I'm not joking) and James began making D-cells and his heart rate would drop from 150-160 down to about 60 bpm. About 20 people ran into the room at this point, told me I was having a c-section NOW and that I didn't have a choice. (I had planned on a natural delivery with no meds- HA! get the epidural people, it's good stuff!). James ended up being sunny side up (with his face up instead of down) and had the cord wrapped around his neck several times. Thank the Lord for a wonderful Dr, Dr. Joseph, who brought James safely into the world. I moved to Dallas 5 months pregnant and came to Dr. Joseph halfway through my pregnancy. Matthew and I had interviewed several different doctors but really felt like Dr. Joseph was who we needed to have. In retrospect, that is one of the best decisions I have ever made.

So when James was born, he weighed 8 lbs 1 oz and was in the 50-60th percentile for weight and height, and in the 15th percentile for head circumference. We were fine with this, and the doctors assured us that even though his head was small, it would grow and be fine. Matthew's family has large heads (most of them can't even wear adjustable baseball caps!) so we just assumed James had been handed my genes on that one. James is my mini-me in almost every way, so that made sense.

I don't have all of his stats and percentiles on me, but over the next few months his head began to grow larger in the percentiles while his weight and length decreased. At his 4 month check-up his head circumference was up to the 40th percentile. At 6 months it had jumped to 95th. I asked about this at the appointment but I was assured that mis-measuring by a fraction of an inch could be a huge change in the percentile. They were sure his head was growing, and was fine. His check up was sometime in early May (again, I don't have the date on me).

One night in early April, my brother and I were cooking out. I was inside and about to take some rolls out of the oven. I grabbed the Bumbo chair and put it on the counter to set James in while I grabbed the rolls out of the oven. I turned around for 2 seconds to take them out, and James wiggled out of the Bumbo and fell from the counter to the hard tile floor. I immediately screamed, picked him up, checked to see if he was breathing, and then called the Pediatrician. Our Ped's office has great hours- 8:30 a.m. to 9:00 p.m. M-F and Sat mornings. Thank the Lord that they were there. They told me to bring him in to be checked out just as a precaution. On the way to the Dr. James began throwing up in the car. By the time I made it to the office, he had thrown up twice. The Dr. on call checked him out, and watched him for an hour to make sure he didn't have a head injury. She said that if we got home and he threw up again to take him to Children's Hospital to have a CT scan. James and I had been home about an hour and he threw up again. We immediately drove to Children's and got a CT scan. Several hours later, the CT scan came back and showed no damage whatsoever. They said he might have a mild concussion, but they were sure he would be perfectly fine.

So approximately one month after the fall, James' head had doubled in percentage size.

On Tuesday, June 14th, James woke up and he nursed like usual. A few minutes after nursing he threw up everything he ate. I thought that he might just have some drainage or a bug as he and I had been at Vacation Bible School the day before. He threw up one more time that afternoon, and really just wanted to spend the day laying on my chest. I thought that maybe I had eaten something that upset his stomach (he's still breastfed) and that once it got out of my system he would be fine.

The next day, Wednesday, June 15th James woke up perfectly fine. We went to VBS and then when we got up he threw up again. He had no temperature- and seemed ok afterwards. He is getting 2 top teeth in so then I thought maybe he was just teething and that was making him sick. I gave him some tylenol and that seemed to help.

Thursday, June 16th James woke up fine again. We went to VBS and then I had an appointment right afterwards. James projectile vomitted about 20 minutes into the appointment. I left and came home where he threw-up 3 more times. I called the Dr. and they made us an appointment for an hour later that night. We saw one of the Peds on call, and he said it was probably a summer bug that had been going around. He said that it would last 3-5 days and we were likely on day 3. We just needed to keep him hydrated and it would pass.

Friday, June 17th James threw up 7 times. I tried to give him apple juice, pedialyte, milk, anything I could think of but he wouldn't keep anything down.

Saturday, June 18th I called the Dr. at 8:30 when they began taking phone calls. They said to come in at 9:30 and see the Dr. on call. We saw that Dr who said that James was dehydrated and needed fluids. They sent us to Medical City Hospital where James received IV fluids and zofran to keep him from throwing up. He seemed to perk up after he was hydrated and were were sent home a few hours later with a prescription for zofran that would last through Sunday. They also confirmed the diagnosis that he had a summer-time virus, although we did not see a doctor until we were discharged.

Sunday, June 19th James threw up once, but kept everything else down. He was incredibly lethargic and only wanted to be laying on my chest asleep. None of his toys interested him, and he was starting to have a little trouble standing when I stood him on my lap which he normally loves to do.

Monday, June 20th we had run out of zofran and James began throwing everything up again. I called the Ped. again, and we saw her Monday morning. She confirmed that he had a summer-time bug, and that the reason he wasn't "doing his tricks" like standing was because he didn't feel well. She said to give him pedialyte to keep him hydrated.

Tuesday, June 21st James was throwing up still. He hadn't had a wet diaper in about 6 hours, so I called the Dr. office. The nurse called back and said to syringe-feed James pedialyte and see if he could keep that down. I gave him a teaspoon of pedialyte every 5 minutes for several hours which finally did the trick. He seemed hydrated, so she said just to keep doing that.

Wednesday, June 22nd James was still throwing up and he had only pedialyte in his system. I called the nurse again, and she said to come in to the office. Our Ped. said that although he wasn't fully dehydrated, we should go to Children's Hospital and get some fluids. They would also run a few tests to see if we're just missing something. She called ahead and got us a bed so we could skip the emergency room.

James and I left straight to go to Children's, and Matthew met us there. I think he started his time-table at this point. The resident on duty immediately noticed a few signs that were worrisome. James' eyes were sunsetting, which means that they can't look up at you and drift downwards. They also noticed that his head was abnormally large and he was having trouble holding it up. They said we needed a CT scan, and thankfully, could compare this current CT scan with the one that he had in April when he fell.

It's so amazing to me how God works. When James fell in April, I was a wreck. I had so much guilt for putting him in that silly Bumbo seat. I kept re-playing it over and over in my head, always asking myself why on earth would I put him in that so high up? What was I thinking? For months I have had the image of him falling and me not getting there quick enough in my head. It's made me doubt my abilities as a mother. But now, that CT scan is proving to be a critical piece in James' future. Because they can compare his current CT to the one in April, we know how aggressive this tumor is. We know that as of April, there was no mass in James' head. That's how the doctors already know how aggressive this tumor is, which likely makes it cancerous. The odds of James having that first CT scan to compare are so unrealistic.

When the resident mentioned that James might have hydrocephalus, I began feeling that guilt all over again. It was possible that an obstruction could have been caused when James fell, and that would have created the excess water. Can I tell you that I would trade anything to have that be the case now? How I desperately wish that it was only an obstruction- because an obstruction is treatable in the sense that once they remove it, everything goes back to normal for James.

Today I said that I feel like my world completely stopped three days ago. But for some reason, the rest of the world didn't. News is still news. Everyone else's lives go on. But for our family, our world as we once knew it is somewhere so far away. I typically plan everything out. I make grocery lists for the entire week and have specific days that I do specific laundry. I make play dates centered around nap times. I used to be an event planner. One upon a time I did. That seems like a million years ago now. Now, my only plan right now is to get to Monday. After Monday I will worry about Tuesday. And so on.

I truly believe that in life, we are all given the opportunity to make choices. I didn't choose this for James. Whether God did or not is a debate I'm not going to get into. The one thing about this entire process that I get to choose is my attitude. So I choose to have the attitude that God is the Great Healer. He knows and loves James more than I can fathom. I choose to believe that. I choose to believe that James should be surrounded with a positive attitude, that all things are possible. That's why I implemented the "no crying" rule in his room. It doesn't mean that we don't get to cry. It's a grieving process. And Lord knows I cry. But I completely trust the wonderful Doctors and Nurses that are going to be operating on my precious boy. Once again, its a choice though.

As Matthew said, we are choosing not to know about percentages, odds, etc. During this time, I am choosing to only focus on things that are helpful. Knowing these things aren't helpful for me, so I just won't know them. It doesn't matter what happens 99% of the time. It only matters what happens in this case.

I am overwhelmed and humbled my the outpouring of love you have all shown for my sweet baby boy. I can't tell you how much every words means to us. I will forever be indebted to you, sweet ones, who lift me up more than I could ever imagine. Please know that I read every single word you write and they bless me in an intangible way. Your incredible faith sustains and strengthens us. Thank you for praying for James. Thank you for praying for Matthew and I. Thank you for praying for our families, and the Doctors and the Nurses. We feel your prayers, and we are so grateful that you are walking alongside us on this journey.

Thank you for being our friends, whether we know you in real life or not. Thank you for loving our sweet baby James, who is the absolute light of our world.

Day One

From Matthew:

Before I forget all of this I want to write it down. The last 48 hours have been a whirlwind. Wednesday evening we took our son to the hospital, to deal with what we assumed was some kind of superbug.

Tonight, our son is in the PICU at Texas Children's. Today he had brain surgery, the second neurosurgical procedure he has had in as many days. Kara and I have slept less than five hours in the last the past two days, pockets of one hour naps sprinkled through the night and the day. Things still feel unreal, like I'm dreaming and someone, sometime, is going to wake me up.

So I wanted to write down the timeline, to keep things straight.

Wednesday:
6:00 pm: Kara finishes at the peditrician's. James' sickness is "unusual" so she's sending us to Children's for observation. No one is worried.
7:00: I arrive at Children's after stopping by the House to pick up some things. I go to the room but no one is there- they'd assigned one and put it in the system before James and Kara got there, I go to admitting and of course just miss them headed in.
7:30 We meet up in the room.
8:00 James is seen by the intern. The intern notes that James appears to have a stiff neck. We are surprised, and worried he may have meningitis. The resident mentions hydrocephalus as a possibility. We're upset, but it's a long way away. A plan is made to send him for a CT scan.
8:20 We go and get the CT. We're escorted by two paramedics who basically walk after us since I'm carrying James. Kara jokes that they should be called "ambassadors" of the hospital. They say we made their day. Everyone is laughing.
8:45: James gets his IV. The IV team at children's is efficient and very nice, we're pleased, as he had a difficult time getting an IV a few days before at Medical City. James still has that IV.
9:15: The resident comes in and informs us that James has hydrocephalus. We are very concerned, ask a lot of questions. The idea of a shunt in his head forever seems daunting.
9:45 We meet with the neurological PA who talks to us about his scan. Compared to a scan he had 2 month ago, this one is not good.
10:15: The neuro PA comes back to inform us that James' scan shows a "mass" of cells, which may be nothing, and may be a tumor. We are devastated, but we pray for mere hydrocephalus. Superbugs are a welcome, even preferred cause of anything.
10:45: Per the neuro PAs instructions we move to the neurological ward.
11:15: Orientation finishes in neuro. The PA comes back to talk to us about hydrocephalus and to check James out. His heart rate stops dropping, below preferred levels. The PA orders us to be moved to ICU.
11:35: The PA talks to us about possibly putting in an EVD (external ventricular drain) as a temporary measure to take care of James' hydrocephalus, mentions we may have to of conditions worsen.

Thursday

AM

12:10: We arrive in the PICU, our new home. We meet our RN, who has been with us since and is fantastic.
12-9: We enter into a holding pattern in the PICU of uncertainty- waiting to see if James will become critical enough to justify the EVD. James is fussy, and we now know, in a lot of pain. We never know exactly when anything is happening as we're holding until the morning. We know that the results of an MRi will be critical to determining our future course. We pray. We hold James' as it's the only way he will stop crying. There's a need to get blood and he won't bleed enough. We see our friends from the IV team again who put in another IV. They wonder how on earth we went from general admission to the PICU in 4 hours.
9:00: We see our neurosurgeon and his team. The explain that the plan is to put in the EVD and then proceed with the MRI. The EVD will buy time to consider the next steps. I comment on his suit, which is a very expensive and very aggressive union of pinstripe/plaid. It looks like fun.
10:00: James gets a breathing tube and the EVD procedure begins. I want to stay to watch. it is hard to imagine leaving him, even though I know I am powerless. I am terrified something will happen while we're gone. They kick me out. I'm thankful.
11:30: We return. The EVD procedure went well and James' pressure is improving. We are thankful and wait for the MRI.
12:15: James goes to the MRI. The staff is wonderful and he seems well. He has to go under for the MRI in order to keep him still.
1:30: After a hurried (literally- we ran from the cafeteria back to the room) lunch, we receive a call that the MRI team has ordered additional pictures of James' spine. We are not encouraged, and afraid of why they need information.
3:00 James returns from the MRI.
4:00 Our neurosurgeon returns. The film he puts on the screen is entitled "8 month old with hydrocephalus and brain tumor" Kara immediately asks about the tumor. I know I asked questions but I remember very little of the next few minutes. I couldn't believe it. I remember sitting at James' bed and holding his hand, hoping we'd wake up. The plan is to treat the ydrocephalus with a ventriculostomy and get a biopsy.
5:00: Kara, who is infinitely more wise than I, institutes a no-crying, all positive attitude in James' room. It is ok to cry. But outside. James is extubated, and seems more himself. He is visibly more alert with the pressure relieved.
6:00: I lock myself in the bathroom and cry uncontrollably for ten minutes straight, curled in a ball in the corner. I wonder when we wake up. I curse god, myself, medicine.
8:00: James starts to smile and play. It is a HUGE relief to see him so happy. He is such a joyful boy, he always has been.
9:00-12: James takes a well deserved nap before remembering that he is awake, and for the first time in who knows how long, not in agonizing pain.

AM
12:00-8:00 With limited interruption, James plays. Even though we are exhausted, it is amazing to see him so happy. He's grabbing at his lines, very disruptive. We don't care. We're relieved to have our wiggeworm back. The nurse says that EVD patients don't often behave that way. As always, James is a trendsetter.
8:00: We hear that the surgery will be at 9.
9:50: Anesthesiology arrives, a sprightly grandmother who likes to share, which is nice.
10:10: The surgery is waiting on consent.
10:50: Our neurourgeon arrives to provide consent forms. We listen. They take James back and we follow as long we can. We kiss him goodbye and save our tears for when he gets rolled away.
11-2: We wait on the results of the surgery. The OR calls several times and lets us know what is going on. The surgery appears to be proceeding smoothly.
2:30: James returns to us in the PICU, tired and a bit groggy but otherwise well. His cranial pressure is much lower. Our neurosurgeon provides his report- the surgery went well, the ventriculostomy was an apparent success and they obtained a biopsy. The biopsy confirms that the tumor is not one which can be treated with merely chemo or radiation and will require a surgery to remove it over the weekend. It is a blue-cell tumor- either a raboid (sp) or a blastoma or some sort. We expected this, so much of the shock of yesterday is worn off. We try to have faith in our plan, god, and our little boy.

We are exhausted. Starbucks is a constant companion. There's one in the building. I cannot express in words how grateful we are for the loving and faithful support of everyone. I never knew how many friends we had until now. James is loved and blessed in more ways than I can imagine. Thank all of you, always.